What a crazy, exhausting month!

Melissa1965
on 9/26/10 4:03 am

What a crazy month it has been. Wanted to give an update!

On September 9th my 73 year old mom ended up in the hospital for pneumonia, takatsuboo cardiomyothopy and they found a 70% blockage in an artery and put in a stint. She was on life support for about a week then without it an additonal week.

Before this she lived alone at a senior apt (not assisted)but had nurses come in twice a day to check on her etc.

Well, I knew this day would come. I did not want her going back and living alone. So the day she came out of the hospital, Sept 21, she moved in with us. We have an extra bedroom we were using for the business and moved it all to the retreat in our master bedroom.

It has been a major change. At this point she is getting around with a walker and needs 24/7 supervision. I set up her bedroom, bought safety rails (she had fallen out of bed 4 times at her atp, fracturing her shoulder once)and a intercom system (baby monitor). The first two days I slept on the floor in her room on a sleeping bag to help with potty runs.

She is doing so much better now and getting around. The nurse said she wants her not to be waited on eventually but to become somewhat independent again. Of course, she has a shower seat and needs help each time and will for the rest of her life. She is on 22 medications and I finally forced her to buy a huge pill box and I organize everything. I take her BP twice a day and give meds according to the results. Getting thrown into caregiver mode was quite hard and will take time to adjust.

I have let myself go ( I know it's bad) and have slacked with my pills, gotten behind in work at home (self employed)have gotten little sleep and have not seen my horses (who are my comfort and therapy when stressed)in almost 2 weeks. I have been stressed like never before.

Anyone caregivers to their elderly parents? Tell me it does get easier. It seems to be. I worry more about it for her. She was independent her whole life until she wa**** in her late 40's with osteoperosis, diabetes, rheumatoid arthritis, high blood pressure etc. 

It's a challenge but also stressful. Just wanted to let you all know what was up and see if anyone deals with the same situation.

HW 268/SW 255/CW 150/GW 160
punchynerd
on 9/26/10 4:37 am - New York, NY
Wow - this is so much. Exhausting sounds exactly right.

So I have thoughts, below.  A lot of them.  It might be a bit too much to read for now, though, so if you're not ready, I'd suggest that you print this out and put it away somewhere for whenever you are.  And if you have more thoughts or questions about any of this, please feel free to PM me.  

I helped care for my grandfather and moved in with him for a couple of years.  (I moved out several years before he died, however.) He had parkinson's and was blind, but had 24-hour CNAs helping to care for him.  They helped solve some problems, but introduced new ones.  Supervising a care team in the home is real work, as you can imagine. 

I wish I could tell you it got better, but it didn't in our case.  I shared responsibility for his care with a few other relatives, and I just had dinner with one of them (granddad died about 3 years ago).  We both still wake up in the middle of the night wondering if we've picked up all the prescriptions, or worried that one of the caretakers will call out at the last minute, or that he'll fall in the shower, etc.  

There's a certain level of trauma in taking on this role.  But there's also the great privilege in sharing in care for someone who gave so much care once.  I wouldn't have traded a moment of it.  Neither would any of my relatives.  We all thank God for that time with him & would, if we could, have him back in that house, with all the problems, over not having him at all.  But that's not how life works, alas. 

What got me through was to receive every moment with granddad - all of them - as a gift.  Even the times when I did things I'd never have imagined having to do for him.  But especially the times we'd sit and talk, or he'd tell stories, or we'd argue over politics or my boyfriends or whatever.  Those are times to cherish that I wouldn't have had without living there, really.  

There's a lot of literature about this, and much of it is good.  A big learning I picked up (after the fact) was to figure out how to articulate my needs to my support team.  Letting others help us allows them to participate in the caregiving in the way they can, and also allows us to maintain relationships.  I also learned that we couldn't care for him without caring for ourselves.  This is huge but incredibly important.  I also learned that we have to pay attention to our relationships/partnerships/marriages very carefully, because this particular caregiving will change a household.  (I imagine it's already changed yours.) I also learned that we have to know our limits, to set them with granddad, and to set them for ourselves.  When the limit has been reached, we have to brave the conversation of sharing that with others, or we can fall apart and not be helpful at all.  

The most important thing I think I learned was to right myself with the concept of death and dying, to understand what I thought of it, and then to have conversations with granddad about it.  These things are on anyone's mind whose body fails.  It's harrowing and holy and blessed when we can talk about it openly, because then everyone involved knows that we don't have to experience those thoughts on our own.      

Bless you as you begin this part of your journey with your mom.  I wish you moments of joy to carry you through all the change and hardship.
5'4 CW: 130, GW: 130
Springtime Challenge to reach goal of 130 in spring MET!!!

  
Melissa1965
on 9/26/10 5:09 am

Thanks so much for all your thoughts and your story of what you went through.

One thing that I keep hearing from others who have helped their elderly loved ones is "it is not easy" and it will be trying.

Sounds like your grandfather was very lucky to have you.

What makes this tought is me and my brothers are estranged. My husband doesn't get a long with neither after a huge fallout. There's a lot more to this story though. I was excited to have my mom come live with me because I seen it as a chance to finally get close. We were when I was young but as adulthood sneaks up on you with lifes responsibilities you tend to get wrapped up in a solitary family life.

But I can understand about cherishing moments. A couple of nights ago we sat at the dinner table laughing over silly things from the past.

I keep searching for a forum/board for support. I don't know if you know of any. I hear support is so important. I have looked into actual support groups and there are a few in my area. And I know about relationships that already exist and how they are affected. I worry that my 17 year old daughter will be affected in ways too. She is an only child and I always heard "thru the grapevine" that Grandma thought she was a spoiled brat. She is far from it. Grandma always had favorite grandchildren and others which she could barely stand. I always wondered how a Grandparent could think this way. I guess this was also my way of showing her that my daughter was not that way at all. I guess when you get suckered into having to buy all your other grandchildrens clothes, toys etc because the parents are selfish, the grandaughter who comes before us the parents is a hard pill to swallow.

I guess I could go on and on but I won't, You have been a great help and a support!

HW 268/SW 255/CW 150/GW 160
punchynerd
on 9/26/10 10:13 am - New York, NY
I hear you!  And glad I could help.  

I heard a wonderful interview with Francine Russo, who wrote a book _They're Your Parents' Too:  How Siblings Can Survive their Parents' Aging without Driving Each Other Crazy_.  You can hear the interview here:  http://beta.wnyc.org/shows/lopate/2010/feb/22/taking-care-of-aging-parents/ 

It's a good listen, and I wish I'd heard her advice before navigating those murky waters in my family.  With your estrangement, it might be especially helpful.  

Just remember that much of what will be frustrating (critiques from your mom, siblings, etc) usually has nothing to do with you and everything to do with the person making the critique.  

Please do keep us posted.  And have fun with your mom!
lerkhart
on 9/26/10 8:32 am
Melissa,
Please take care of yourself.  I know it is hard to do this but it won't help if you get sick also.

We took care of my husband's stepfather for around 8 months when he found out he had pancreatic cancer.  My husband's mother had passed away the year before.  I can say it was a very trying time - but it was also one of the best things for our family.  I think our children saw how family takes care of family.  He was a great person and we enjoyed caring for him.  It was very stressful sometimes because it was a blended family.  He had 4 children and DH had 3 brothers.  Some helped more than others.  This was way before my WLS and I can't imagine how hard it would be to do that along with taking care of all my food and vitamins also.

Good luck.  Please stay in touch with us and keep us updated.

Linda
14.5 lost pre-surgery  5'1 1/2"                                      LW-Apple-Gold-Small.jpg image by PlicketyCat
Melissa1965
on 9/26/10 11:22 pm

Thanks! I will definately keep you updated. It is easy to forget yourself. Almost like being a mother and wife. lol.

I have a whole lot of doctors appts for her coming up and for me. That's hard to because we're self employed and I try not to leave during the day. I am very busy in my home office and a missed phone call means missed income. And my husband relys on me when he is "out in the field". I am hoping it doesn't put a strain on the marriage too bad.

HW 268/SW 255/CW 150/GW 160
(deactivated member)
on 9/26/10 9:04 am
Melissa, 
I have been in your situatuation over the years,with my mother,mother-in-law and father- in- law. What I learned is its a great time to heal hurts, show and give unconditional love, and talk and laugh with your loved ones. It was the hardest thing I ever had to do but so glad I was given the opportunity to do! take time for yourself and your family, will keep you in my prayers. Brenda
Melissa1965
on 9/26/10 11:26 pm

Thanks Brenda!
You know what's so funny? One of the reasons I wanted her here and not anywhere else was because I'm selfish that way. I wanted mom all too myself. Silly isn't it? I wanted that mom/daughter relationship that I hadn't had in forever. When I was 15 I talked my 2 brothers into moving to the south with my dad. I made it sound like a great thing. Because  wanted my mom to myself. Funny what we do.

HW 268/SW 255/CW 150/GW 160
PamtasticNewLife
on 9/26/10 11:16 am
Hi I'm Pam, I'm sorry you're going thru this with your mom. I understand and it's hard to do. I'm looking at having to do this myself soon.
Have you tried or do you have her in an adult day care program?
Most will pick the patient up and bring them back .helps to keep their minds active, socialization, and activities( crafts, exercises)
Besides, giving you several hours for yourself.
Check with Council on Aging in your area.
I was also told to called social worker at hospitals for a great source of information.
Hope this helps.
Pam
















Melissa1965
on 9/26/10 11:29 pm

Thanks Pam for the idea. My mom would not like that al all. She didn't even like socializing with the other ladies and men at her apt. Plus I could never do that. And I couldn't afford it either. Once she is moving around more we can do things together on the weekends. I don't do anything during the week because 5 pm hits and I am wiped out. I even had mentioned the senior center and she frowned at that.

HW 268/SW 255/CW 150/GW 160
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